Tag Archives: just say mo

Thank you so very much for participating in the Liver Life Walk to raise funds and awareness for the American Liver Foundation again this year. On behalf of myself, a former liver disease patient, and the 30 million people who are currently living with liver disease, thank you for your support. There are over 100 types of liver disease that can affect men, women and children of all ages, so your support has contributed greatly in efforts to research, educate, and find ways to cure the disease.

It seemed like such a wonderful day! It means the world to me that you ladies went, wore my t-shirts, and represented Team Just Say Mo at the walk in my absence. I wish I could have been there, but with you ladies going it made me so incredibly happy! This year we raised a whooping $4,655 for the ALF, that is by far the most we’ve ever raised in the four times we’ve supported the walk!! Thank you to all of those that have supported me and my team over the years, I will never be able to thank you enough!

Much love,

Mo

#JustSayMo

Some of the 9-hole ladies at Tamarack Country Club walked at the Liver Life Walk in Stamford on September 27th.

The 9-holers and my second cousin Maryann at Commons Park Harbor Point in Stamford, CT for the 2015 American Liver Foundation Liver Life Walk.

As you may already know, it is my dream to get on The Ellen DeGeneres Show and raise awareness about organ/tissue donation. I have made a short-movie called the “MOtivational MOvie” about my journey of overcoming a life-saving liver transplant and a fatal fungal infection in my brain that I acquired post-transplant (which has nearly a 100% mortality rate in transplant patients).

Organ Donation Month happens to be right around the corner during the month of April, so there is no better time to share this video than now : ) Please help me share “The MOtivational MOvie” so it can get into the hands of Ellen, and also raise awareness about the power of organ donation! Thank you so much for your support and helping me make my dreams come true!

The 2014 Transplant Games of America will be held in Houston, TX July 11-15!

Dearest friends, family, and supporters,

I am overwhelmed with gratitude and excitement to announce that I will be participating in the Transplant Games of America in Houston, TX, July 11-15! I will be representing the Transplant Team of Connecticut in the Golf, 5K and two other sporting events of my choice! This life-saving organ donation has given me an opportunity to lead a life with meaning and purpose, honor those affected by transplants, and inspire others to save lives through the generosity of organ donation.

Participating in the Transplant Games just two years after my miraculous transplant and brain surgeries is a dream come true! I am so excited at this amazing opportunity to travel, meet fellow transplant recipients and donors, and get back to my athletic roots! In order to make this dream become a reality, I need some serious help fundraising. This year it will cost an estimated $50,000 to send the Transplant Team of Connecticut to the games. In order to afford this, I will be setting up a personal donation page to raise a goal of $2,500 for my participation.

As you may already know, I belong to the internationally recognized club, Toastmasters. From speech #4, “How to Say It’, here is my fifth speech, “Lessons Learned in the ICU” given on February 5, 2013. For more info on our club, please go tohttp://www.westconntoastmasters.org.

“The greatest wealth is health.” ~Virgil, Ancient Roman Poet

Good evening Mr. Toastmaster, fellow Toastmasters and honored guests.

As many of you already know, in May of 2012 I was fatally ill; I spent a total of 71 days in the hospital or ICU. I survived a life-saving liver transplant, and two life-saving brain surgeries to remove a fatal fungal infection in my brain, called invasive aspergillosis. While spending as much time in the ICU as I did is not something that I wish upon anybody, I did learn three very valuable life lessons from my experiences in the ICU that I’d like to share with you tonight.

The first lesson I learned in the ICU, is that you might not always be able to change your circumstances, but you can always change your attitude, and a positive attitude almost always preserves over a negative attitude. When you are as sick as I was in the ICU, you can’t always take care of yourself, and when you can’t take care of yourself, that means someone else has to. Initially, it made me feel uncomfortable to have all of the nurses and doctors poking and prodding at every nook and cranny of my body. One time in the ICU, I was with my aunt Caryn, and cupping one side over my mouth with my hand I leaned over and whispered to her, “Aunt Caryn, I’m embarrassed they have to wipe my butt.” Aunt Caryn started laughing. I was shocked! “Are you seriously laughing? I just told you that I’m embarrassed about them wiping my butt, and you’re laughing?!” While chuckling she responded, “If it makes you feel any better, you will be wiping mine in 20 years!” At this time we both started laughing uncontrollably! While I was humiliated at first by my lack of privacy, it was something that had to be done for my greater well-being. By being surrounded by my hilarious family, I was able to laugh and make light of the very heavy situation going on, which made things appear to not be as severe as they actually were. Instead of dwelling on all of the negative that surrounded me, I was able to focus on positive energy, and I think that played a huge part in my survival.

The second lesson I learned while being sick in the ICU, is that life really is about the “little things.” I learned that we should learn to appreciate the “little things” while we are fortunate to have them, because you just never know when they will no longer be available to you. When I was in the ICU, there were many things I couldn’t do on my own. I couldn’t walk on my own, shower on my own; at times I couldn’t even breathe on my own. I was also restricted on what I could and couldn’t eat, and sometimes I couldn’t eat or drink at all. When I was discharged from the hospital, I was instructed no restaurants, no movie theaters, and no shopping malls for six months. This meant no Cheesecake Factory, no Loews to catch a movie, and no Target for six months. I am on a life-time restriction of no gluten, no alcohol, no sushi, no salad bars, and, as of now, no driving. I guess that means no more driving to Ruby Tuesday and hitting up the salad bar before the 6:00 showing of “Lone Survivor” and then driving my friends to go grab an ice cold beer and some sushi after the movie. I was restricted from common, day-to-day things that we don’t even think twice about; we just do them. My entire lifestyle has had to change, and I didn’t realize how important some of the “little things” were to me until now, that I can no longer enjoy them. I wish I had appreciated these “little things” that I was so privileged to experience and enjoy before my illnesses.

The third and final lesson I have learned from my time in the ICU, is that your family is the most important thing you have in your life. Being sick is a burden. There’s no way to say it besides it “sucks”. It sucks for you and it sucks for anyone around you, because as I mentioned before, when you can no longer take care of yourself, that means someone else has to. While I was sick in the ICU, I learned that some people just couldn’t be bothered. Those same people who couldn’t be bothered, are sometimes the people you needed the most. My sickness brought out the best in some people, and it also brought out the absolute worst in others. I’m only going to talk about the best though. One of the best things that could have happened to me is when my aunt Caryn and cousin Rocco got on a plane, flew down to SC, picked me up and drove me up here to Connecticut. One week later I was admitted to Yale receiving the best medical attention I could receive. Without a doubt in my mind, I wouldn’t be alive today if it wasn’t for my aunt Caryn and cousin Rocco coming to get me and bring me closer to some of the most reputable medical facilities in the country. I learned family is something you should never take for granted. When all else fails, for me it was my health, my vision, my strength, and my hope, I always had my family. Because of my family’s love and support, I was able to get my strength, my health, and my hope back and I am making a fantastic recovery, despite the horrific odds against me!

After being ill, I have learned that no matter what circumstances you are given in life, a positive attitude almost always perseveres over a negative attitude. I have learned that life really is about all of the “little things,” and that your family are the most important people in your life, and with their love and support you can rise above any challenges or adversity that you are faced. I will leave you with this:

“Some lessons can’t be taught; they simply have to be learned.” ~Jodi Picoult

Yesterday, September 29, 2013 I was one of two Liver Life Champions representing the American Liver Foundation at the 2013 Liver Life Walk of Fairfield County along with little Charlee and her Angels 🙂

I attended this event last year just a few short months after being discharged from Yale for a miraculous liver transplant and two incredible, life-saving brain surgeries to remove a rare, and fatal abscess consisting of a highly aggressive fungal infection called invasive aspergellus.

Below, I gave this speech to hundreds of family, friends, and supporters in efforts to raise awareness, educate, and assist the 30 million Americans currently living with liver disease in one way or another.

The experience I had at this year’s Liver Life Walk was one of the best days of my life. I felt so comfortable sharing my story to the crowd. It wasn’t just any crowd though; these were people who have been affected directly or indirectly by liver disease.

I will say no more, you can hear how it went in the above video. Thank each and everyone of you for your continued support of Team Just Say Mo, the Liver Life Walk, the American Liver Foundation, and Donate Life.

Much love,

Mo

Little Charlee, her mother and I cutting the ribbon to kick-off the 2013 Liver Life Walk, Fairfield County!

This was my speech prepared for the Liver Life Walk Kick-Off Event, at Harbor Point in Stamford, CT.

As Rocky Balboa once said, “You, me, or nobody is gonna hit as hard as life.”

I have been an athlete and seemingly healthy all of my life. I graduated with my BA in Communication Studies in 2007 from Furman University, in Greenville, SC on a full-ride to play Division 1 Women’s Golf. In March of 2012, five years later, I was still living in Greenville, SC in the midst of making a transition to St. Augustine, FL. I know plans can sometimes change suddenly, but I could never in my life envisioned how drastically my plans were about to change. No one could have!

In March of 2012, I was diagnosed with end-stage liver failure and I somehow had to digest that I might only have a couple of months to live and that my ONLY hope of survival was in getting a liver transplant. I never imagined having to deal with anything of this magnitude at only age 26, so I called my Aunt Caryn, because she always knows the right thing to say to me. “Aunt Caryn, I have been diagnosed with this rare disease that only 1 in a million people get, my liver is failing, and I need a liver transplant to survive.” Calmly, she responded, “Monique. Only one in a million people can play golf as well as you. You are going to have to take that focus you learned from golf and use it to getting better. You’re going to need a strong mind because you’re going to be fighting for your life.” My aunt said she would be there for me, and we could accomplish anything together, so from that moment on, I put on my game face, ready to brave this life-threatening challenge as best as I could.”

Everything happened so rapidly from there on out, and within a week my aunt and my cousin Rocco flew down from CT, picked me up in my car in SC, and we drove back up to CT. A week after I arrived in CT, I had my first liver evaluation at Yale-New Haven and was admitted to the transplant program on the spot. Within one week of being admitted to Yale hospital, I suffered internal bleeding, and I lost my pulse four times.

While the internal bleeding almost killed me, it did shoot me to the top of the transplant waiting list. The average wait time is 361 days for a liver, but on May 3rd 2012, not even two days after I was officially put on the transplant waiting list, I was a recipient of a matching liver! It was a phenomenon, but even before I got the chance to really celebrate this miracle, I had developed an extremely rare, extremely fatal fungal infection in my brain called invasive aspergellus. Invasive aspergellus in the brain has nearly a 100% mortality rate for immunosuppressed patients, so my only option for survival was to have a very risky brain surgery to remove the abscess. The surgical team was unable to remove the entire abscess out on the first attempt, so almost three weeks later I was under the knife again for an even riskier brain surgery. Imagine having three major life-saving surgeries in a matter of five weeks’ time–my body felt like I had been plowed over by a speeding Greyhound bus!

After spending most of the spring of 2012 in the hospital, I was finally discharged on June 14th to my grandparent’s house. While this was a huge day for me, I was still not off the hook, as a trace of the infection remained. A PICC line was put into my arm, so for 6+ hours a night, 7 days a week, I was on a very aggressive IV treatment of an anti-fungal agent called Amphotericin B. The Ampho is a very toxic agent, and my kidneys could only tolerate the drug for 7 weeks before it was causing too much harm. FINALLY, on August 3, 2012 I had the PICC line removed out of my arm and it was adios Ampho and hola road to recovery!

My family was informed that even if I did survive the multiple brain surgeries, there was a pretty good chance I could come out of surgery deaf, blind, paralyzed, or worst of all, dead. I definitely didn’t come out deaf, (even though sometimes I might wish I was deaf so I wouldn’t have to hear my loud Italian family, JK J). I am far from paralyzed. With a lot of hard work, I went from being bed-ridden and extremely weak to running my first 5K in May in 33:44:66. I am not completely blind. I did lose my peripheral vision to the right in both of my eyes from my multiple brain surgeries and can no longer drive a car, but that hasn’t stopped me from driving a golf ball as I just recently participated in the American Liver Foundation’s Charity Golf Tournament in July, where I won the long drive contest for the females. A few days later I shot a round of 80 from the white tees at Candlewood CC. Most importantly, I am not dead. My body, my mind, my emotions, and my soul went through so much in such a short period of time, but I have worked very hard physically, mentally, emotionally, and spiritually to get to where I am today, and because of that I am very much alive–perhaps the most alive and healthiest I ever been in my life!

Somehow, to medical disbelief, I am a survivor. Why? Well I don’t know exactly why, but I can tell you this. I had a very impressive medical team at Yale who was doing everything within their power to make sure I was leaving that hospital alive. I can’t go without saying I have the most amazing friends who even though most of them live 800 miles away from me, they checked in on me daily, sent me cards, and flowers, and gifts, and some of my friends even came to visit me from afar. My family was incredible. Every single day out of the 52 days I was at Yale, at least one (but usually more than one) member of my family made the hour long trip to Yale to be with me. I honestly wouldn’t be alive today if it wasn’t for my aunt Caryn and everything she has done for me, especially instilling in me that those one-in-a-million odds I was labeled with didn’t mean one-in-a-million victim, it meant one-in-a-million survivor.

Throughout this whole journey I had so many people believing in me. When you have an army of people supportive of you, constantly telling you that you are a fighter, that you’ve got this, you start to believe it. I was like Rocky Balboa, only I was in the ring battling death. Round after round I kept fighting, and fighting and like Rocky, every time I got knocked down, I got right back up. The verdict may not have ended in a knock-out, but what is most important is that I prevailed, and I am a survivor.

One year ago was the true beginning of my recovery, and now, by just looking at me, you would no idea I had a life-saving liver transplant or survived a deadly infection in my brain! I am living proof of a miracle, but that miracle wouldn’t be possible without the advances made in medicine over the past couple of decades. One-in-ten Americans (30 million) are currently living with liver disease, and anybody can be that “one,” and you never know when it could be you. That is why it is very important for us to come together and become educated about liver disease, raise awareness, and most importantly support the American Liver Foundation and Team “Just Say Mo” at the Liver Life Walk of Fairfield County! (For for more information about supporting me and my team “Just Say Mo” at the Liver Life Walk this year please visit this link.

I want you to remember, “Life ain’t about how hard ya hit. It’s about how hard you can get hit and keep moving forward. ” ~Rocky Balboa

I have been asked to be the 2013 Liver Life Champion (Fairfield County) this year! The Liver Life Walk will be held on September 29th, in Stamford, CT and I will be speaking at it this year!

I am so honored to have this opportunity to represent the American Liver Foundation and to publicly speak about my journey. Thank you for all who have followed me and supported me, I wouldn’t have the courage to be doing this without your continued support!

If you are in the area I would love for you to attend the event on September 29th, 2013 at 100 Washington Blvd, Stamford, CT 06902. I have designed Just Say Mo T-shirts for the event and I will be letting you know soon about purchasing those.